Dementia Research for Individuals with Disabilities

As our Members age, VALLEYLIFE is learning more and more about how dementia affects individuals with disabilities. Sadly, we are finding that dementia affects individuals with developmental disabilities at a higher rate than the general population. VALLEYLIFE and other agencies in the industry must learn how to care for and support Members with dementia and their families and/or guardians.

Pam Schneider, Assistant Director of Quality Assurance and Residential Senior Program Manager, has taken the lead at VALLEYLIFE to research and guide staff in supporting our Members with dementia. Last fall, Pam was selected to participate in the Hospice of the Valley Dementia Fellowship Program. The goal for the fellows and their respective organizations is to improve the quality of life for the patients with dementia, their families and our communities.

Each fellow submitted a “change project” for their organization. Pam’s change project includes additional training focused on dementia for all direct care staff, building a dementia resource library at VALLEYLIFE that can be easily accessed by staff, and learning activities to enhance engagement of Members with dementia. One resource to help engage Members will be the purchase of Perfect Petzzz. These pets give individuals with dementia the stimulation of a real pet, but do not require the care. Pam will also meet with dementia professionals to learn about activities to stimulate Members afflicted with the disease. These activities will help keep the Members engaged and may slow the progression of the disease.

The final phase of the change project includes building a training library and training VALLEYLIFE staff. Nicole Macko-Ranallo, Training Manager for VALLEYLIFE, attended a “Train the Trainer” workshop the last week of September. The workshop covered the topics of: understanding dementia and its effects on individuals with disabilities, providing direct services and care, and developing a dementia capable environment and programming. Nicole will work closely with Pam to ensure all VALLEYLIFE direct care staff are trained on recognizing the symptoms and learning to care for individuals with dementia.

Dr. David Coon, Associate Dean of Research Initiatives, Support and Engagement, and Professor with the College of Nursing and Health Innovation at Arizona State University, also reached out to Pam last spring to participate in the dementia research he is conducting. The research includes focus groups comprised of family members and caregivers for individuals with Down Syndrome or another Intellectual Developmental Disability (DS/IDD) who develop Alzheimer’s Disease or a Related Dementia (ADRD). Pam worked with Dr. Coon to find family members and staff who would be willing to participate in the focus groups.

The purpose of these focus groups is to provide feedback on the available materials, and to share the caregiving knowledge, experiences, and challenges they are facing. VALLEYLIFE recently held the first set of family and caregiver focus groups at their 29th Avenue facility. Dr. Coon plans to hold additional focus groups in the near future. All participants, along with the information discussed in the focus group, will be kept confidential. If you are a family member or caregiver who would like to join an upcoming focus group, please call 602-496-1239 for the Intervention Development for Caregivers of People with DS/IDD and ADRD , College of Nursing and Health Innovation at Arizona State University.

VALLEYLIFE is a nonprofit organization that provides Residential, Day, Home and Community Based, and Vocational services to individuals with disabilities in the Phoenix metro area. For more information please visit our website at www.valleylifeaz.org.